Monday, January 28, 2013

I really hate quality of life questionnaires

I am at my urologist's office and they make me take these stupid "quality of life" questionnaires. I dislike them mostly because they are subjective and ask questions about how I feel, and make me rate them on scales that to me are different depending on the time of day, the weather and my mood.

I am in a dark mood today. I feel like a heavy cloud over me.

I just finished seeing him, and had a major emotional meltdown discussing with him pain, my lack of help from my GP. He at least is a helpful doctor and is referring me to a pelvic pain physiotherapy clinic, as he really feels it would be the next thing for us to try as I deal with chronic pelvic floor pain syndrome. Yet another diagnosis. However he was the one doctor who helped me through my initial horrible pain of my first two bouts of prostatitis that started things moving to my severe (to me) fibromyalgia that I have me. Many acute and chronic issues were caused by the severe prostate infection.

If I could draw a picture of how I feel today it would be of a raging fire all around me with me in the centre in a very tight blanket that is not fire-proof. It is a very dark day, and it is hard to see the light at the end of the tunnel.

I thought that the diagnosis of Aspergers would help me understand myself better and allow me to begin to deal with things better knowing what I am facing. However I have learned painfully quickly how different relating similarities with someone with Aspergers is then actually identifying as a person with Aspergers.

Because of seeing things in me that I never knew, or understood, or suffered through, I feel myself so strange, awkward, so different, so baffled, yet so sure of everything. I am so angry and sad at the numerous painful experiences I had in my childhood, youth and adulthood that could have been lessened if my parents and I only knew!

Most of my thoughts are irrational and highly over-emotional right now, but I just can't filter them out right now, and focus them away from this chaos in my mind.

I am struggling with all the diagnoses, mis-diagnoses and cross-diagnoses (co-morbid?). I am on so much medication that I m left taking medication because of side effects of medication, this medication for this "syndrome" another for that "syndrome" and still others to treat what they guess things might be.

Perhaps it is the bane of the Canadian universal health care system that doctors are so overworked for such low pay that they don't have the time to really care for their patients, or learn much more than the bare scope of whatever their area of medicine is. Understand chronic pain? Pffft. Because we don't pay for our care, and there re so few doctors, we can't fire our doctors or get. Second opinion without a huge rigmarole.

I am going to try to get help today to sort through this mind crap that I have right now because I am functionally non-operative at this moment, and have been most of this day.

I hope the next time I write I can be reflective or more "up" than I am today. Sigh.